ASSISTING THE DYING TO MAINTAIN DIGNITY IN DEATH

Although I started out in Afrikaans, I decided to write this reflection in English to make it accessible to ALL of my faithful readers and beyond.

In response to an invitation from Hospice Bloemfontein, I embraced the opportunity to attend a special event this past Sunday evening.  HOPE AND HEALING, a profoundly deep, open discussion on the topic of ASSISTED DEATH which was hosted by a local Bloemfontein Dutch Reformed Church, Berg & Dal NG Gemeente.  As introduction, a 24-minute Netwerk24 video documentary was screened.  It told the heartbreaking story of the last part of 63-year-old Carol de Swardt’s journey to her life’s final destination in Switzerland, where she was able to legally end her own life with the assistance of medical professionals.  Carol’s unspeakable suffering for an unbearably long time led her to this decision, undoubtedly the most difficult and important of her entire life.  Her heartfelt plea was overtly simple - I do not want to lose myself, I want to die with dignity.  And then she did exactly that.  WITH the blessing of her beloved children, Simone & Donovan, but WITHOUT their presence.  Their presence at their mother’s side in Switzerland, carried an inherently tragic risk of criminal prosecution upon their return back home to SA, where partaking (even as supportive bystander) in this particular form of assisted death, is illegal.  Sean Davison, activist and cofounder of DignitySA, was there at Carol’s side to support her.  DignitySA is an organization committed to legalizing ASSISTED DEATH and they have already taken action by submitting their motion to the court.  They believe that our constitution already underwrites a citizen’s right to end his/her own life, but that incorrect interpretation thereof led to wrongful prosecutorial criminal classification.

After the video ended, we were addressed by four speakers who shared their individual insights into the matter with us.  Magdel Louw, Netwerk24 journalist who published Carol’s story in Rapport, shared her journalistic journey with us and it was obvious that she had been deeply touched by Carol’s story.  Brand Doubell, tenured Theologian and ethics expert, used carefully weighted words, in effortless humility, to draw us into a complicated, non-binary world where limiting and flawed psychological mindsets only serve to further exacerbate human suffering.  Hanneke Lubbe and Dalene van Jaarsveld are the turbocharged dual-stroke nuclear engine behind Hospice Bloemfontein and, with their mesmerizing passion, they educated us on the ethos and purpose of Hospice with specific regards to bringing effective relief to all the various forms of human suffering during the end-of-life phase of a terminal patient.  Hanneke is a qualified trauma and palliative care counselor and serves as founding chief executive of Hospice Bloemfontein.  Dalene is a gifted physician specialist with advanced medical certification in palliative medicine and an undergraduate qualification in pharmacology. 

For the last part of the evening, Jan Lubbe, the gracious team leading minister of the host church, facilitated an engaging panel discussion with the speakers and then opened it up to the audience for Q&A.  To the four speakers on the panel, Jan posed the question CAN WE REALLY DETERMINE HOW AND WHEN WE DIE?  I listened to five esteemed individuals who, each, carry significant authority in their own respective fields and who not only considered one another with the utmost respect and courtesy, but who also displayed noticeable reverence and awe for God Almighty, Creator of human life.  There simply was NO neat, shrink-wrapped simple little answer with a pretty bow on top.  Instead, this question opens up an ugly can of worms which has the ability to provoke and incite the unholiest of unholy inside the hearts of believers.  As I sat there, I thanked the Lord while I marveled at two distinct things.  Firstly, the calm and respectful interaction between people talking about a critically unstable and potentially explosive topic.  Secondly, the unparalleled bravery of this particular Dutch Reformed Church and the Dutch Reformed Church in general to, despite the ongoing relentless harsh and unwarranted criticism from hostile mainstream media, not shy away from addressing the toughest issues faced by all mere mortals in this broken world.  Truth be told, I did not take notes, but the words of these people resonated with me and it stirred up a fiery flame of passion to release my gift of writing on this topic.  

Human suffering is an extensively complicated issue and I like to define it as the continuous state of experiencing relentless, persistent and prolonged pain, any and all kinds of pain.  Although there exist a few inherently subjective measuring tools for physical pain only, there are no standardised tests in existence for accurate measurement of suffering.  This means that it cannot be definitively measured or fully understood.  If it cannot be measured, it cannot be quantified, and if it cannot be quantified, it cannot be studied and it cannot be classified.  And it, most definitely, CANNOT and SHOULD NOT be compared.  This especially applies to the end-of-life stage, where acute and prolonged physical, emotional, relational, social and spiritual pain are encountered at one time or another.

What qualifies me to write about ASSISTED DEATH?  Simple answer….my experience on a very specific journey.

My beloved daughter-in-love Carli started 2020 with a suspicion that she might be pregnant with a little sibling for her and my son Daniel’s 18-month-old firstborn son, Micah.  She suffered from nausea, dizziness, headaches and fatigue.  However, multiple negative pregnancy tests and relentlessly intensifying symptoms placed her on a harrowing pillar-to-post journey of misdiagnoses by dismissive doctors.  Then, nine months after the onset of first symptoms, instead of wrapping her arms around a newborn, she had to wrap her mind around the diagnosis of inoperable brain cancer.  The only recommended treatment for the tumour attached to her brain stem, was a gruelling 7-week course of full-brain irradiation every weekday.  By Christmas 2020 Daniel, Carli and Micah moved into the garden flat on our property, and together, we embarked on the road to FIGHT CANCER amidst a global pandemic.  During and after radiation treatment, Carli was prescribed an obscene dosage of corticosteroids to combat brain swelling, which ironically might have kept brain swelling under control, but it eventually made her entire body expand to three times its original size.  She presented with onco-treatment-induced-Cushing’s-like syndrome and her satiety centre was completely destroyed.  The FIGHT CANCER journey was a proverbial dog’s breakfast of hit-and-run-and-hit-and-miss-and-run-anyway.  Increased collection and dosage of strong medication.  Intensifying symptoms to the point of out-of-control vomiting would lead to dreaded hospitalisations for IV infusions.  Covid restrictions made hospital stays lonely which exacerbated anxiety.  The tumour did not shrink, Carli was merely kept clinically alive while her physical suffering increased during this journey.  In May 2021 I advocated for the involvement of Hospice as it was time to withdraw our energy from FIGHTing CANCER to investing it in dealing with the consequences of a depraved and insatiable undefeatable monster which was greedily sucking the life out of our beloved Carli.  Enter Hanneke Lubbe, Linette Pelser and Dalene van Jaarsveld, dignity-enforcing, compassionate PowerTrio, the death-de-stinging-squad.  Together we embarked on the road to FINDING DIGNITY WHILE DYING.  On a bright Spring afternoon, I sat down with Carli and compiled a comprehensive Advanced Directive which outlined the terms and conditions under which my 26-year-old daughter-in-love wished to die and she assigned to me the position of chief enforcer of her wishes.  I teamed up with this PowerTrio, and until Carli passed away eight months later, we addressed ALL but two, of Carli’s suffering with ALL the human means available to us.  For a short while, the sanctimonious, far-away, out-of-context-Bible-babble and glaring absence of indifferent, pretentious people who claimed to have loved and supported us, caused us immense spiritual pain.  Even before joining my beloved Pellissier NG Gemeente, Charles James, team-leading minister of Pellissier NG Gemeente, intentionally entered our lives to love and support us.  Charles addressed Carli’s spiritual pain and availed himself to be her spiritual guidance counselor to the very end.  Charles invited Attie Steyn (also from Pellissier NG Gemeente) to address Carli’s psychological pain and he did so with compassionate faithfulness.

I have grown to love each member of our Hospice PowerTrio (and our Pellissier Tribe) deeply and I believe that, without them, we would not have been able to create the loving space for Carli to live out her last days, surrounded by the love and care from her family, and ultimately, for her to die with as much dignity as humanly possible.  BUT it was no walk in the park, it was a vicious war which has left behind debris, scars and painful casualties which remains to this day.  Although it is undoubtedly true that indescribable beauty also arose from the devastation, for the sake of this specific reflection, I will omit them.  I believe that, as Carli’s A-Team, we did everything in our power to address ALL the aspects of her suffering, but that the reality was that our efforts had limitations and that for every crisis which pushed beyond our limits, we failed her.  Those handful heartbreakingly soul-crushing moments when my brave 26-year-old daughter-in-love who has essentially lost everything except hearing, impaired sight and breathing, are all maxed out on the highest dose of the most powerful opioid painkillers and the pain is still relentless, pleads with me to hold a pillow over her face.  I have never revealed this in public, nor her initial request for me to ASSIST her with DYING when the time comes (before she completely loses who she once was).  She made the last-mentioned request early on, before she was even confined to the mechanical hospital bed.  I COULD DO NEITHER!

I watched my beloved Carli bravely fight a wicked, cruel disease which mercilessly drained all the life out of her in a drawn-out war of hellish torture.  I was there every step of the way.  Carli was not diagnosed with an aggressive stage 4 glioblastoma which boasts a proven track record of killing swiftly.  No, she had a sneaky, yet somewhat retarded, submissive tumour which attached itself to her brain stem.  It bullied her into end-of-life-stage, but was too impotent to finish the job properly.  She was indeed dying, but with the crushing prospect of having to do so for an unimaginably long time.  It has been almost 29 months since Carli passed away, I will miss her always, but I am profoundly grateful that her suffering ceased naturally before it got diabolically worse.  I was spared the agony of having to watch her starve to death while comatose, because it was her documented desire to not be fed through a tube.  I was spared the agony of watching, helplessly, how violent seizures would cause her weak muscles into painful spasms and contort her body into unnatural positions.  I believe that, in order to answer Jan’s question truthfully, and by implication address the issue of ASSISTED DEATH, we need to refrain from our instinctive automatic response of painting silver linings around all dark clouds.  Some clouds in this broken world simply do not deserve a shiny silver lining.  The dark clouds of hopeless despair of end-of-life patients who continue to suffer despite the best devoted care and support, fall into this category.  Day in and day out, they are bombarded by F5 storms when a mixture of blood, sweat, spit, snot, pus, vomit, pee, poop, cerebrospinal fluid and tears hit the proverbial gigantic fan of life which is permanently set to turbo-speed.  And it is blissfully independent from loadshedding, so it never stops.  I was inside such a storm and I would like to take this opportunity to apply the lessons I have learned from it onto the issue of ASSISTED DEATH:

1. My answer to Jan’s question, is YES.  DignitySA has my full support in their endeavour to legalize ASSISTED DEATH in South Africa, provided that it complies to the following requirements:
1. Aside from the necessary comprehensive psychological evaluation and sign-off, a course of intensive care treatment from an accredited, multi-disciplinary palliative team should be made compulsory for ALL patients.
2. In response to a valid concern raised by Dalene van Jaarsveld about the current lack of regulation in the composition of administered medication used to execute ASSISTED DEATH in countries around the world, that composition of these “death cocktails” (whether in IV or pill form) be subjected to proper, scientific research and then responsibly regulated to ensure optimal efficacy.
2. I salute Carol de Swardt and her children for their tear jerking, yet breathtaking bravery.  Carol, I am so sorry that you had to do it all alone in a cold and clinical room in a foreign country!
3. Thank you to Jan Lubbe from Berg & Dal NG Gemeente, Hanneke Lubbe & Dalene van Jaarsveld from Hospice Bloemfontein, Brand Doubell & Magdel Louw for your bravery to speak out and, thereby, putting your exposed necks on the chopping board.
1. DEATH is a certainty, a part of life from which not a single person on the planet, is exempt.
2. It is NOT morbid to talk about DEATH, it is responsible and we need to talk to our loved ones about it, just like we talk about studies, careers, properties, vehicles, investments, retirement, vacations, etc.  After all, out of all of these, only DEATH is guaranteed.
3. In the field of medicine, the discipline of palliative care should be taken from its current squashed-into-obscure spots with bad air, bad light and bad exposure, and placed in its rightful place of centre stage, in the limelight.
1. ALL medical specialists should be trained on how to, humbly, step aside when they are no longer able to offer curative treatment and, graciously, allow their palliative colleagues to take over patient care.
2. Medical protocols and procedures need to be updated to ensure that the pursuit of dignity for the dying would overrule the impatience of greedy profit-driven medical aids and doctors.
4. As a believer of the Christian faith, I love the Lord with all my heart and I desire to serve Him by being faithful with His calling on my life within the local church where I have found belonging.  During the F5-fluid-hit-the-fan storms, I faithfully prayed for miraculous healing, and when things continued to deteriorate, I faithfully prayed for wisdom to face reality.  Suffering is real.  DEATH is gain.  God is good.

Hospice can most certainly be credited with the highest commendation for trailblazing the way to restoring and upholding the dignity of the dying.  I am wholeheartedly behind this commitment, even to the point where we can no longer uphold the dignity of the dying while they are still clinically alive.  We need to forge a new way in the proverbial quicksand swamp of bureaucracy and religious legalism.  Trailblazing this particular uncharted territory will require faithful, determined, humble, honest, brave, level-headed, considerate and compassionate people to take hands and stand together to uphold the dignity of those who require ASSISTED DEATH.